Nicole Stenberg's son Owen. (Supplied)

By Alessia Proietti

AHS coverage ended in 2011

A mother’s love: GoFundMe raises $3,410 for cranial remolding helmet

Feb 15, 2022 | 9:53 AM

With the joy and warm feelings of Valentines Day still lingering, there is one unconditional love, however, that needs no day of reminder: that of a parent for their child.

In less than two days, Red Deer mother Nicole Stenberg raised $3,410 for her son Owen in need of a cranial remolding helmet for a flat spot on his head. A treatment no longer covered by Alberta Health Services (AHS), Stenberg raised the money on GoFundMe.

“It’s just really unfortunate that there’s nowhere for families like us to turn to,” said Stenberg.

Born on Sept. 28, 2021, Owen was diagnosed with achondroplasia, a common form of dwarfism. Resulting in weaker muscle tone, babies with the diagnosis are recommended to spend most time lying flat on their back for proper spine growth. However, due to this position, Owen developed a flat spot on the back of his head, known as plagiocephaly, also caused by the baby looking too often in a preferred direction.

If left untreated, it is rare that serious long-term complications could arise but the portion of the head would remain flattened permanently. Early treatments for babies during their first year, however, include physical therapies and the most effective, the cranial remolding helmet.

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AHS formerly covered the cost of the helmets until September 2011, explaining in a statement that, “mild to moderate cases of positional plagiocephaly can be improved by active repositioning therapy with a focus on tummy time for infants under 4 months of age.”

Helmets remain covered for post-surgery needs and daily use protective helmets for children with self-abusive behavior, seizure disorders, and healing of chronic wounds and cranial defects.

Stenberg attempted physical therapy methods that would entice Owen to move his head in the direction least preferred. Objects in the room were rearranged, Stenberg would hold toys in an area encouraging Owen to look in the least preferred direction, and rearrange his position in his crib. After approximately five sessions, she was not seeing the progress she hoped. Her pediatrician recommended the helmet as the next step.

Due to the pandemic, AHS confirmed the non-urgent Infant Head Shape Program at Alberta Children’s Hospital in Calgary stopped accepting referrals for “cosmetic reshaping concerns” where helmets would cost $2,500.

The only route left for Stenberg was to visit a private clinic.

With a helmet cost of $3,200, Stenberg states she tried other avenues of funding including the province’s Emergency Financial Assistance program, Alberta Supports for referrals to other agencies, Alberta Aids to Daily Living (AADL) and Family Support for Children with Disabilities (FSCD).

Stenberg says she was denied each time as her situation for the funding did not fall under a covered reason.

“We talked about taking out a loan to cover the helmet,” she said.

A last resort, Stenberg decided to create a GoFundMe account with Owen’s father, Phillip.

“Even if we only get $500, it’s just $500 less that we have to take out for a loan,” she thought before creating the account.

Created on Wednesday, Feb. 9, the family was able to not only reach but exceed their goal of $3,200 to $3,410 in less than 48 hours.

“We really want to thank our community. None of this would have been possible without everyone who shared, donated, and just got our story out there. We’re so thankful and so grateful for absolutely everyone’s help,” said Stenberg.

Stenberg believes the Government of Alberta should reinstate full or partial coverage for the helmets, even if it is more for cosmetic remolding. She believes that is just as important of a reason for healthy child development.

“I feel like, especially for males, head shape can definitely alter your self-image and mental health in the long run, especially if it is really noticeable,” she explained.

Owen has an appointment on Feb. 17 for a scan measuring the shape of his head. The clinic will be using 3-D printing technology to construct the remolding helmet to be worn for approximately five months, the same amount of time it took for his head to flatten.